The role of social media in endometriosis: a systematic review of users, content, information quality, and content creators

Latini CM, Chiara Maria Latini, Cremonesi M, Monica Cremonesi, Meschia V, Valentina Meschia, Rosy Matrangolo, Matrangolo R, Coro I, Ilaria Coro, Mathew Leonardi, Leonardi M, Vignali M, Michele Vignali, M. Vignali, Paolo Vercellini, Vercellini P, Salmeri N, Noemi Salmeri
Journal of minimally invasive gynecology · 2026 · doi:10.1016/j.jmig.2026.06.035 · PMID:42463040 · W7168761525
review OA: closed public-domain-us
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⚙ AI-generated summary by claude@2026-07, 2026-07-18 ⓘ

This systematic review found that social media serves as a crucial platform for endometriosis peer support and awareness but contains variable information quality, with most content generated by non-healthcare professionals.

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Abstract

OBJECTIVE: To systematically review qualitative and quantitative evidence on the role of social media (SM) in endometriosis awareness and disease management. DATA SOURCES: A systematic search was conducted in PubMed and Scopus up to December 28th, 2025. METHODS: Original studies investigating the role of SM in endometriosis were included. Exclusion criteria comprised non-original articles, non-English publications, analyses limited to single webpages, and studies lacking relevant data. Methodological quality of individual studies was assessed using the Newcastle-Ottawa Scale (NOS), Mixed Methods Appraisal Tool (MMAT), and Critical Appraisal Skills Programme (CASP) checklist. Four domains were examined: (i) characteristics of SM users, (ii) types of content shared, (iii) information quality, and (iv) type of content creators. TABULATION, INTEGRATION, AND RESULTS: Twenty-one studies performed SM content analyses, while five used surveys/interviews. SM users were predominantly young women and frequently reported psychological burden, diagnostic delays (>10 years), and negative healthcare experiences. The most commonly reported SM themes were personal experiences (n=15), symptoms (n=11), infertility/fertility concerns (n=10), disease management and treatments (n=14), emotional support and advocacy (n=14), and distrust toward healthcare professionals (HCPs) (n=9). Dysmenorrhea was the most frequently discussed symptom, while surgery, hormonal therapies, and complementary treatments represented the main treatment-related topics. Overall information quality was heterogeneous, with approximately 23-30% of content containing misinformation, particularly regarding treatments and alternative therapies. Ten studies evaluated content creators: non-HCPs generated most SM content (80-95%) and generally showed higher engagement, whereas HCP-generated content demonstrated greater accuracy, reliability, and educational quality. CONCLUSIONS: Social media play a key role in endometriosis awareness and disease management by providing peer support. However, information quality is variable and often suboptimal. Greater involvement of healthcare professionals is needed to improve reliability and counterbalance misinformation.

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Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (52)

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